Old age psychiatric services

Services for younger people with dementiapeter Bentham

Jenny la Fontaine

Abstractdementia is not a condition that exclusively affects older people. esti-

mates suggest that there are 15,000 younger people with dementia in

the UK, although the actual figure may be three times higher. service

provision remains slow to acknowledge and provide specialist provision

for this group of people, and as a consequence many younger people

affected by dementia and their families do not receive specialist assess-

ment, diagnosis and intervention. Whilst absolute numbers of younger

people with dementia seems small in any one area, in reality calculations

made to estimate the services needed should recognize the high level

of interventions required by the person affected by dementia and his or

her family. a comprehensive service that provides specialist assessment,

diagnosis and interventions, within the context of a multidisciplinary and

multi-agency team, is required as are specific provisions for meaningful

activity and occupation relevant to the life experiences of the person

and his or her family.

Keywords assessment; family care; psychosocial interventions; service

provision; younger people

Dementia is a condition traditionally associated with advancing age. However, this devastating condition does not exclusively afflict older people. Based on clinical studies it is estimated that there are just over 15,000 people aged between 30 and 64 years affected in the UK, although it is likely that the true figure is up to three times higher.1 The prevalence of younger people with dementia is predicted to increase by 17% by 2051.1

Surveys in the 1990s consistently reported inadequately planned and poorly coordinated services, with few Primary Healthcare Trusts providing dedicated services, dedicated staff, or consultants with special responsibility. This situation has slowly improved, but in 2002 still only 15% of respondents to a survey

Peter Bentham MMedSc MRCPsych is Consultant Psychiatrist for the

Birmingham Working Age Dementia Service and Honorary Senior

Clinical Lecturer at the University of Birmingham. His main research

interest is in developing effective treatments for Alzheimer’s disease

and other forms of dementia.

Jenny La Fontaine MA RMN DPNS Cert Ed FAHE PG Cert Couns is a Research

Officer at the Oxford Institute of Ageing, University of Oxford, and

was a Consultant Nurse with the Birmingham Working Age Dementia

Service. Her research interests include families and their experiences

of dementia, person-centred care and psychosocial interventions for

people with dementia and their families.

psychiatry 7:2 8

reported a local consultant responsible for younger people.2 As a consequence, younger people with dementia and their families suffer social exclusion; an aspect of this includes falling between service providers within health and social care services, whose perception is that younger people with dementia do not fit within their operational criteria.3

Dementia

Dementia is a clinical syndrome caused by brain disease in which there is acquired impairment of multiple cognitive functions suf-ficient to interfere with daily life in the absence of clouding of consciousness. Dementia can be due to many causes, including single-brain insults such as trauma and stroke, but this contribu-tion will restrict its scope to progressive, degenerative and alco-hol-related disorders. For planning purposes it can be assumed that for a total population of 500,000 there will be approximately 150 prevalent cases in younger people.4

Because dementia at a younger age occurs within a family con-text, it can be expected that the total number of people requiring a service at any one time is likely to be greater than the absolute figures indicated above. Harvey5 identified that the experience of dementia at a young age brings with it unique needs relating to diagnosis, treatment, rehabilitation and support, valued occupa-tion and activity and information. These needs present challenges for service delivery because of issues such as life stage at onset, the presence of dependent children, and the financial implications of retirement at a young age. These needs require skilled multidisci-plinary staff, who are able to deliver a range of psychosocial inter-ventions with the person with dementia and his or her family.

Diagnostic needs

Accurate diagnosis of dementia in younger people is difficult, with incorrect or uncertain diagnoses reported in 30–50% of cases. Although Alzheimer’s disease is the commonest cause, it accounts for less than half the cases, and there are many other, sometimes rare, diagnoses to consider (Figure 1). Diagnosis is particularly difficult in people with a history of functional psychi-atric disorder and in those from ethnic minority groups, where cultural and linguistic influences on test performance make inter-pretation difficult. For people referred to generic services, dia-gnostic delays are frequently encountered and people are often under-investigated.

• early and comprehensive assessment is needed to detect potentially reversible causes of dementia in younger people

• psychosocial interventions should be a core aspect of multidisciplinary team practice for people with dementia and their families

• person- and family-centred practice should underpin services for people with dementia and their families

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Old age psychiatric services

Although less than 1% of dementia may be partly or fully reversible, most of these cases occur in younger adults.6 Con-sequently, it is essential that younger people with dementia are thoroughly investigated in specialist units, with neuroimaging being a mandatory requirement. Multi-professional input into the diagnostic process is essential, and requires the coordinated efforts of psychiatrists, neurologists, psychologists, neuroradi-ologists, and increasingly geneticists. Furthermore, within the context of diagnostic assessment, a broader approach to assess-ment should be incorporated, which focuses on the experience of the person affected and his or her family, provided by nurses, social workers and occupational therapists. This approach would encompass the need to develop a collaborative relationship in which support throughout the process of diagnosis can be pro-vided. Furthermore, needs and challenges can be identified, with a view to the future service provision required.7

Symptomatic treatment needs

There are four licensed symptomatic treatments for Alzheimer’s disease (AD) and one for Lewy body disease available in the UK. These treatments are not a panacea, and may not be beneficial in other diagnostic groups, such as those with frontotemporal dementia.8 In contrast to older people, most younger people with AD present to services for a trial of such treatments. Several studies have reported high levels of psychiatric and behavioural problems in younger people with dementia; clearly, physically aggressive behaviour in a 50-year-old is associated with greater risks than in an octogenarian. Behavioural disturbance is associ-ated with increased carer stress and burden, and in the presence of dependent children, it could create further risks. The best way of managing these symptoms is unclear because treatment with neuroleptic drugs is associated with significant morbidity and mortality. Symptoms such as agitation are not solely the prod-uct of abnormal biology, and are likely to be best managed by

(Source: Harvey, 1998)

Alzheimer’sdisease

34%

Other causes 19%

Vascular dementia

18%

Frontotemporal dementia

12%

Alcohol-related dementia

10%

Dementia withLewy bodies

7%

Causes of dementia in younger people

Figure 1

psychiatry 7:2 85

psychosocial interventions.9 A comprehensive assessment and formulation with strategies for intervention, carried out by a multidisciplinary team is invaluable. In particular, behavioural disturbance arising from frontotemporal dementia can be diffi-cult to manage without specialist knowledge of the biochemical and cognitive psychopathology of the condition.

Rehabilitation and support needs

The whole-family experience of dementia at a young age neces-sitates that assessment and intervention are based on a person- and family-centred approach. Surveys have drawn attention to the problems experienced by younger people using services specifically designed for older, frail people, where they may feel isolated and unsupported. For example, use of day care and respite is usually low when it is provided within older people’s services. In contrast, most younger people with dementia who attended specialist day centres providing age-appropriate activi-ties reported the experience as positive and uptake is high.7 The comparatively low prevalence of dementia in younger people and their diverse needs may make it impractical to provide spe-cialist day and respite care units, and alternative solutions need to be considered.

An emerging model of care for younger people with demen-tia is the development of intensive domiciliary and community-based respite and support services. Care workers engage the person with dementia in therapeutic daily living and social activi-ties, with the aim of promoting independence and participation in enjoyable leisure activities. People with dementia and their families find this type of service valuable and often preferable to traditional day and respite care.

It is not unusual for younger people with dementia to be made redundant or be dismissed from work. Employers should be encouraged to recognize dementia as a reason for early retire-ment so that pension rights and other benefits are not affected. Furthermore, some younger people with dementia wish to remain in employment, and efforts should be made to persuade employ-ers to support people to retain appropriate employment.

It should be recognized that people with dementia and their families may require psychological interventions to assist them in coping with the journey of dementia. It is widely acknowledged that dementia brings significant and ongoing challenges for the person and his or her family. Therapeutic interventions such as individual and group psychotherapy are increasingly used, and thus need to form a core component of multidisciplinary team practice.10–12

Information needs

People with dementia and their families frequently report a lack of adequate information and counselling particularly around the time of diagnosis.13 Information about the diagnosis and its implications in terms of treatment and prognosis must be given in a timely, user-friendly and sensitive format. Under-going assessment for possible dementia is daunting, frighten-ing and in some ways disadvantageous for younger people and their families. Pre-assessment counselling is essential in enabling people to prepare for and give consent to an assess-ment. Information and education programmes have been shown

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Old age psychiatric services

to be beneficial and are readily applicable to younger people. Telephone helplines such as CANDID have also proved to be useful sources of information for people with dementia, fami-lies, carers and professionals.

As has already been highlighted, developing dementia at a young age is usually financially disastrous for the individual. This situation is compounded by the complex nature of the benefits system. Advice and information provided by a specialist social worker can be invaluable.

Carer and family needs

Caring for a younger person with dementia is a major source of stress and burden, which is known to be a major determinant of community-based service use. Approximately half of carers of younger people with dementia can be recognized as having psy-chiatric morbidity, usually presenting with symptoms of anxiety and depression.

Because entry into residential care is best predicted by carer burden it is essential that the family’s needs are recognized and if possible met. Carers have a legal right to have their own needs assessed. Children and adolescents are also adversely affected and deserve input in their own right.14 Marked disruption in nor-mal family dynamics may require specialized input from fam-ily therapy teams.15 Additional complications arise in relation to inherited disorders requiring liaison with genetic services and the provision of genetic counselling.

Inpatient assessment and long-term care needs

The risk of institutionalization seems to be disproportionately high in younger people with dementia, with up to 30% residing in some form of care. It has been estimated that approximately 15 residential, nursing or long-stay places are required for every 100,000 people at risk.5 Factors that contribute to this have been outlined above. Specialist long-stay provision is generally viewed as being essential, because younger, physically robust patients with dementia do not integrate easily with older people who are frail and sick. Similarly, if younger people with dementia require an inpatient assessment admission, their needs cannot usually be adequately met on either older-adult or general-adult psychiatry wards. However, there is no universal answer to this problem; flexible, local solutions need to be found.

The Birmingham working age dementia service (serving a population of 1 million)

• community mental health nurse (2.5 Wte)

• clinical psychologist (1.0 Wte)

• secretary (1.0 Wte)

• Occupational therapist (1.0 Wte)

• support worker (4.0 Wte)

• team manager (0.3 Wte)

• consultant psychiatrist (1.0 Wte)

Wte, whole-time equivalent

Table 1

psychiatry 7:2 8

Development of needs-based, coordinated services

For successful service development, specific commissioning arrangements based on local need are required, with an individ-ual identified at a purchasing level with responsibility for the ser-vice.4 At a provider level there must be strong clinical leadership from well-motivated, experienced, specialists with reserved clini-cal time. For populations of 500,000 and above a dedicated multi-disciplinary team is justified (Table 1). Younger people and their families should be involved as partners in service development, and there must also be close collaboration with other services (Figure 2), with clear but flexible demarcation of responsibilities. Initial development should concentrate on diagnostic and com-munity-based support services. Finally, comprehensive services for younger people with dementia should be underpinned by a philosophy of person- and family-centred care and have clear care pathways capable of meeting a person’s needs at all stages of the illness so that people are no longer pushed from ‘pillar to post’.16 ◆

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